Seasons Greetings from the Island of Misfit Toys

I’m going to tell you a secret.  The holidays can be incredibly stressful for  a parent of a chronically or terminally ill child.

It’s because a lot of times we feel like residents on the Island of Misfit Toys.  You know that story, where Rudolph the Red Nosed Reindeer lands on an island of toys that are a little different. The Charlie-In-the-Box, the spotted elephant, the train with the square wheels, or the water pistol that shoots jelly.  They are toys that are different enough to be pushed to the sidelines, in favor of a more sparkly Christmas.

How do we feel different?

It’s the Christmas Cards, for a start.  The perfect pictures. The smiles. The letters that accompany them, telling of milestones and trips and accomplishments.  Don’t get me wrong, we LOVE that you are doing so well, that your kids are doing well, that you’ve done these amazing things.  But our child’s milestones might be different.  Our accomplishments, though amazing for us, seem delayed to some.  We don’t know exactly what to write about, what to share.  We feel a tiny bit of shame in this, the mix of envy and embarrassment, and the knowledge that a few of our kids won’t be around next Christmas.  We don’t want to bring you down with us, but for some of us, this is a reality.

Then, there are the families that spend the holidays in the hospital, and though the staff does its utmost to make the time special, the truth is that  it’s not home, it won’t be home, and it’s the last place that most people want to think about on Christmas.  That’s the reality.

I recently sat around with other parents of chronically ill kids, and this is what we talked about, the wanting to be happy for others, the burden of making the holidays special, and the feeling like you’re always not measuring up to the ideal.  For me, here is a small example. Wendy takes medication three times a day (besides her insulin.)  We are fastidious about giving it to her. We have a weekly pill organizer, and she never misses her morning dose.

Except on Christmas.

For the past three Christmases, she’s missed her morning dose, because we get up earlier and open presents. Then there’s a rush for coffee and breakfast, and cleaning up.  We usually realize around 10 am that we’ve forgotten.  There is always guilt with forgetting. There are parents who have kids in wheelchairs and on breathing machines.  Parents who have to do PT on their kids’ chests.  Medical care happens even on the holidays. Parents are vigilant even on the holidays.

We love our kids.  We love our life. And we love the holidays. But sometimes when we smile and say we are stressed, or busy, it’s more than that.  Sometimes it’s that we realize if we told you more it would ruin your holiday mood, and you deserve to be happier during the holidays.

If you’re really interested, ask more questions.

In the meantime, enjoy your holiday, and your family, and the season.

Happy Holidays.

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“Wonder”: Review by a Mom of a Sick Kid.

The movie “Wonder” is the story of a young boy, Auggie, who has a facial deformity.  He has been in an out of the hospital for his entire life. The whole family revolves around his care, and everything else gets put on hold:  Mom’s academic career, sister’s attention, and poor dad doesn’t even get a chapter devoted to him.  Auggie, however, has the hardest time, he knows that he looks different from other kids, and now he has to face the horror of going to school for the first time, in *gasp* middle school.  Now, let’s just say it here and now, middle school is tough for everyone involved, but to start at a school for the first time with a noticeable difference, well, that makes it all the harder.

I admit, I cried for at least 75% of the movie “Wonder.” (Wendy cried for the whole movie.)  And why not, there were moments that I could relate to, because at some point in her childhood, my beautiful teenage daughter looked different from other kids, but she was too young to notice.

Because of Wendy’s incredibly high blood pressure, she was taking five different  blood pressure medications.  One of them, minoxidil, is a vasodilator; it expands the blood vessels, which lowers the blood pressure.  You might have heard of the drug, minoxidil, it’s the main drug in Rogaine.  It’s side effect is that you grow extra hair, hair that is darker and more coarse.  For Wendy, she went from a blond to a brunette in just a few months, and her hair grew so quickly that I needed to get her hair cut every three weeks.

Wendy had other things going on, a patch that she wore just below her collar bone for another drug that helped control her blood pressure, and the hair wasn’t just on her head, it was all over:  arms, legs, forehead, back.  She looked….well….different.   Obviously, different.

Wendy was only four, and being the vibrant child that she was, she didn’t notice. We still went to museums and the park, and walked to the hospital twice a week for blood work.  She still swam in the public pool and played in the splash parks. She had an easy smile and a friendly, outgoing personality with other kids.

But the other moms, well, they looked a little nervous around my child.  And the kids, well, they would ask what was wrong with Wendy, why she looked like that.  Thank God, Wendy never noticed.  I would explain that Wendy has an illness and she takes a special medicine to make her feel better, but the medicine makes her grow extra hair.  That satisfied the other kids, maybe not so much the other moms.

Then there were the times where people who knew Wendy didn’t recognize her because she had gone from a blond to a brunette, because she had the puffy cheeks due to her kidney failure, because she had the patch below her collar bone.  Those people would see me and ask where Wendy was, and then visibly startle when I pointed to the child next to me.  Those are the ones Wendy noticed.

There was a woman who cut Wendy’s hair, every three weeks, at Supercuts. We would arrive, and the other beauticians were visibly concerned over how to cut Wendy’s hair, and this woman would just scoop her up, ask about her day, give her two lollipops, and say, “See you in three weeks.” I loved that woman, because she didn’t make a big deal about Wendy.  Wendy was just another kid to that woman.

I cried because I could relate to some, but not all, of the feelings that the mother, played by Julia Roberts, was going through.  Yep, my life had been put on hold.  Yep, my life revolved around Wendy’s care.  Yep, I still worry that Penny doesn’t get enough attention.  Yep, I worry about every new step forward that Wendy has to take ( like going to Washington DC this spring with her 8th grade class for a week without me.  I think I might die.)

But the truth is, that most of us, thankfully, are not Auggie, and we are not Auggie’s mom.  Most of us aren’t Auggie’s sister, or dad.

Most of us are Auggie’s friend, Jack Will.

Jack knows that Auggie is different, and doesn’t know what to do about it.  He’s nice to Auggie because he has been asked to be, and because he is a scholarship student, he’s feeling like he really has to do it.  But he learns that Auggie is sweet and kind and funny and smart, and they really become friends.  But Jack still knows that Auggie looks different. Jack says the wrong thing on Halloween, about his appearance, hurting Augie’s feelings and having to make amends.  Spoiler alert:  it turns out to be ok. Jack Will realizes his mistake when Auggie starts to avoid him.

Jack was my favorite in the book, and he was my favorite in the movie because while Auggie’s family doesn’t have much choice, they need to be supportive of Auggie.  Jack does have a choice, and he chooses to be kind.  Which is the point of the story.

The author, R.J. Palacio, wrote the book Wonder because of a real life experience.  Her young son burst out crying, seeing the face of a young boy with a facial deformity at an ice cream shop.  She was so mortified, because her child wasn’t emotionally prepared to be kind to this young boy, and she went home and wrote the book, from multiple perspectives.  Each perspective in the book speaks from one of the characters (except the Dad, which gets me angry).  Each perspective shows that living life with a loved one who is ill isn’t easy, but you make room for kindness. Bad days will happen, but you move forward, together.

Auggie’s presence changed the tenor of the school, because he was kind as well.  And the other students became protective of him when they saw how the outside world viewed him because they didn’t know him.  You would be tempted to say that the moral of “Wonder” is don’t judge a book by it’s cover, but you would only be half right.

The other half of the moral is it’s ok to be afraid and kind at the same time.

That’s the lesson we want to teach our kids.

 

 

Where Unicorns Run Free

My cell phone rang one hot August evening, it was a friend from college.  He and I often text, but hardly ever speak on the phone. I could tell almost immediately that something was wrong.  It didn’t take him long to get to the point.

“Charlotte has been diagnosed with Type 1 Diabetes,” he said, and then “I thought maybe we should talk to you about it.”

We have been friends for twenty years.   He and Michael never lived more than two doors away from each other the entire four years of college.  One summer, the four of us all lived in the same apartment, working random landscaping jobs for extra money.  We had shared laughs and beers, practical jokes and serious moments, accidents and deaths and then marriages and births.  When Wendy was in the hospital, Charlotte’s mom was pregnant with her and she never came, but Charlotte’s dad came and mustered other friends to help.  He brought books and jokes.  He sometimes just sat with us when it was all too terrible for words.  That was ten years ago.

We are still present in each other’s lives.  Michael and Charlotte’s dad go out for an occasional beer after work.  Our kids just recently were in a film together to promote the National Park Service.  When I was approached about looking for kids who would be willing to tromp around Minute Man National Park with tri-corner hats and wooden muskets, I could not think of a more perfect family to share this adventure with.  The kids learned about the Revolutionary War, and the adults got two whole days to sit around together.

Once a year, all of the adults (including other college friends) go out for a giant fondue dinner, three courses, lots of wine, more jokes and more laughter.  This year, due to unforeseen circumstances, I had to cancel at the last minute, and these friends made a “Pocket Darcy”:  a picture of me pasted on a Popsicle stick, to be a part of all of the pictures so I would still feel loved and a part of the night, even though I was reading 300 names at a college commencement that had been rescheduled.

When Charlotte was diagnosed, her parents had an idea that something was wrong, she wasn’t acting like herself on their summer vacation.  But she was diagnosed just a few days before school was about to begin, and so they were thrown into a whole new world of counting carbs, and blood sugar checks and two am wake ups to check it again.  They had to trust the nurse with something they had only just began to tackle themselves.  They were nervous.  They called a few times, and we tried to be supportive.  Michael strictly instructed me to be a good listener, not to give out too much advice.  When I told Charlotte’s dad this he responded, “No, I don’t care how much advice you give, I just want to hear your voice and tell me it’s going to be ok.”  So that’s what I told him.

And it was the truth.  Sort of.

The truth is that when your daughter gets diagnosed with diabetes, your world changes. There’s a lot more structure built into every day, . There are a lot more plans that need to be made about birthday parties and sleep-overs.  There is more worry, there’s no way to sugar coat that.  It’s manageable, but it’s lots of worry.

Charlotte’s mom would occasionally email me for advice, and at some point she asked if Charlotte and Wendy could get together, and I suggested Wacky Weekend at The Clara Barton Center for Diabetic Girls.  I’ve written about the camp before, it’s Wendy’s favorite place, and I thought that Charlotte would love to try it out for a weekend, with just some time alone with Wendy. Oh, and with dozens of other kids who have diabetes too.

Charlotte was SUPER EXCITED ABOUT IT!!!!

Her mom and dad were nervous.  She was only ten; she had never been to sleepaway camp before.  They asked me if I would be the emergency contact for the forms.  Then we decided that maybe Charlotte’s parents should just spend the weekend with us.  Their younger child and our daughter Penny could soak up all of our attention, while Wendy and Charlotte enjoyed camp.

It was a win-win.  We dropped off the girls and then took the younger kids to museums and National Parks.  We had card games and sleepovers at our house.  But throughout the weekend, understandably, Charlotte’s parents were nervous that she would be unhappy. They were nervous that the nurses wouldn’t be used to her.  They were nervous that Charlotte would be homesick, or wouldn’t like the camp, or she and Wendy wouldn’t get along as roommates in a cabin.

All of these worries, while understandable, turned out to be unfounded.

Sunday afternoon, when we all arrived at camp to pick up the girls, Charlotte came running up to her camp, hugged them both, told them how much she loved the whole place, and gave them a tour.  She told them she really wanted to go there for the summer camp program.  She read them her journal that she wrote a few times a day about all the fun she was having, even though she missed her parents.

They cried.  Out of joy and relief.

And I had to walk outside and dry a few tears of my own. Who would have thought that this would be something that we shared too.  Our daughters with the same condition, going to the same camp, twenty years later.

I walked to the fire pit in the center of the camp, where bricks have names and inscriptions written in them along the walkway and around the ring of stones.  Written among the bricks is a poem by Shel Silverstein:

This Bridge

This bridge will only take you halfway there

To those mysterious lands you long to see;

Through gypsey camps and swirling Arab fairs

And moonlit walks where unicorns run free.

So come and walk awhile with me and share

The twisting trails and wondrous worlds I’ve known

But this bridge will only take you halfway there–

The last few steps you’ll have to take alone.  

Our girls would have a whole history without their parents, but with each other, at camp.  They wouldn’t be alone.   They would always have someone who understood what they were going through.

So would their parents.

There was something sweet in knowing that.

Hawkeyes’ New Tradition, Good Medicine

You know, sometimes you stumble upon a story and it stays with you for a long time.  This is one of those stories.   The University of Iowa Stead Family Children’s Hospital just recently opened a few new floors to their hospital.  These overlook the Hawkeye’s Stadium. The staff decided that they would dedicate a portion of the new construction to a “press box”, a place where sick kids who are inpatients and their families could watch the Hawkeyes play home games.

One mother had an idea, and she wrote to the team on facebook. Wouldn’t it be nice, she said, if at some point in the game, the whole stadium got up and waved to the kids watching in the hospital?

The team decided to do it.  They started in September.  Now, between the first and second quarter, the whole stadium stands up and waves to the kids in the hospital, and they wave back. It’s like a seventh inning stretch, but it  connects the two worlds.  It helps the sick kids and the families feel like they are being seen.  It creates awareness for those who go to the games that there are sick kids there all the time, through all the seasons, and through all the holidays.

And the best part, is it doesn’t cost a thing.

All because a mom of a sick kid wrote to a team, and told them what would be nice.  She told them what she wanted.  And it has changed a culture.

How amazing is that?

Here is a video of the story!  Watch the whole thing!

Watch and share with your friends.

Imagine if parents were always heard like this and communities helped in the healing process.

 

 

 

CAREgiving, defined

We will all be CAREgivers at some point in our lives, whether it be to a parent, a spouse, or a child.  When you are a parent of a chronically ill child, it is likely that your CAREgiving duties will overlap, because your child needs constant care, but other people in your life get sick as well.  It can feel overwhelming and isolating all at the same time.

I’ve been thinking a lot about what being a caregiver means, and I’ve come up with a helpful acronym.  A CAREgiver Coordiantes, Advocates, Manages Resources and Educates:

Coordinate.  You coordinate your child’s care.  You arrange for doctors’ appointments, other therapists appointments, prescriptions, food and drink limitations or special considerations. You calibrate any medical devices that your child needs.  You coordinate the care that is necessary daily, weekly, monthly yearly:  finding the people and the products that will best serve your child.

Advocate.  You make sure your child has what they need to be successful in all areas of their life.  You talk to your school administrators, you request an IEP (Individual Education Plan), or a 504 (Individual Medical Plan).  If your child needs certain accommodations, you arrange for them, whether it is a nut-free table at the school lunchroom, or an extra ramp to enter a room more smoothly. Advocating also means making sure the janitor doesn’t wipe the peanut tables and the peanut-free tables with the same sponge.  In my case, advocating means asking the school nurse to write a letter home at the beginning of the school year to remind parents to keep their kids home if they are sick, because they can put my daughter in the hospital. It can also mean speaking out for other children who have the same medical condition, or one similar.  Additionally, it might mean joining a Family Advisory Council or advocacy group in your child’s specific illness, to make the world a better place in the future for your kid and those like your kid.  It’s a large umbrella.

Resource management.  I don’t need to tell you this.  Medical supplies are expensive, even if they’re covered by insurance.  My daughter wears two medical devices, neither of which are fully covered by insurance.  Also not covered are the tegaderm films that go underneath each device.  Occasionally the devices cause a skin infection, so we have to make sure the certain antibiotic topical ointment that works is always at home and always available.  Her anti-rejection meds are covered by insurance but her supplements (that the anti-rejection meds strip from the body) are not.  Quarterly visits with specialists are necessary, along with their co-pays and the occasional trip to the Emergency Room rounds out the payment.  What isn’t said are the things that aren’t bought or are pushed off because of the payments that fulfill medical need.  I’ve had the same snow boots for twenty years and I live in New England, so they get used.  Most of my clothes come from thrift shops.  Michael wears his shoes until literally there are holes in the bottom.  This is how you make money stretch.  And I consider us to be very lucky, we live a good life, with good food and a warm home.

Educate.  Parents of chronically ill kids are constantly educating. We are educating the other adults in our child’s life:  for birthday parties and sleepovers and soccer games. When the time is right, parents educate their children about their illness and (hopefully) help them slowly transition to self-care.  We often educate the public, bringing awareness to our child’s condition, or the condition of those like him or her.  We also educate ourselves, we are mini-experts on our child’s diagnosis and condition, we keep up on the newest technologies and research studies.

This is what we do both as parents and as caregivers, but it’s amplified when you are both parenting your child, and also are a CAREgiver to them.  Now, add onto the fact that other people get sick too, in the short and the long run. What happens when your spouse or your parent, or God forbid, another child gets an extended illness.  Now all of your specialized training gets stretched or even thrown out the window.  You may know all there is to know about your child’s disease, but you’re not a medical professional, you don’t know all the illnesses.  You need to learn a new language, a new set of doctors, a new protocol of medicine.

It’s a terrible burden, and it’s constantly shifting.  It reminds me of the picture of the world, that is being held up by elephants on the back of a turtle.  It’s heavy, unpredictable and unrelenting.

I hate to be gloomy about this because there are beautiful moments to being present in the difficult moments of your loved ones, but it takes practice to see the beautiful moments, the sunrises and the warm cups of coffee, the smiles and the small favors.  None of us knew what we were signing up for when we decided to become parents, there was no instruction manual or warning label.

I take the month of November as a month of gratitude, and write down one thing a day that I’m grateful for.  Some things are quite large and some are tiny. but it’s an actual daily vigilance, because let’s face it, some days really suck.  But even in the worst days there is something to be thankful for if you look hard enough.

Good luck, CAREgiver.  Try to find something beautiful in each day, something you’re grateful for.

 

 

Thanks, Carepages.

Carepages goes dark tomorrow and I am going to miss it.  What is Carepages?  It was a health blog that you signed up for to notify your loved ones about your health journey.  We have used it as a lifeline for the past ten years.  When Wendy was super sick, we wrote every day, sometimes twice a day, to keep our loved ones up to date.  As she got stronger and better, we reduced our notifications.  Recently we only used it to mark big milestones.

The thing I loved about Carepages is that it made you really sit down and take stock of the medical day.  In any given day of craziness, it was good to really evaluate what was good, what was bad, and what were the hopes for the next day. And it buoyed our spirits to get messages from our family and friends telling us that they were thinking about us, praying for us, praying for Wendy.  Hospitals can feel isolating, and it was nice to know that people were supporting us from afar.

Today I spent much of the day copying and pasting all of the updates, over 200 of them, over the course of our 10 year medical journey.  I have to be honest, I wept reading a lot of the updates.  Wendy was so young and sick, and I knew, reading the updates, that things were going to get worse before they were going to get better.  I was so young too, and angry at our situation, the unfairness of it all. In 2007 and 2008 Wendy spent every holiday in the hospital, some 180 days.  I left my job, and Michael took an extended leave.  I slept less than three feet from my parents in a hotel room for months, and it became clear that we needed to move into an apartment.  We had two blissful hours with Wendy in the apartment at Christmas, so she could open up her presents, before we had to bring her back to the hospital.

I marked the day that Wendy’s kidneys started working again, the first time we made it home, the day she coded in the PICU, the day she was put on the transplant list. I read the day of her transplant, and the first anniversary, the second anniversary, the fifth anniversary.

As I read, I also read messages from loved ones who hadn’t gotten married yet, or hadn’t had their babies yet.  Friends who hadn’t gotten divorced yet.  Stalwart friends who were battling their own illnesses and have since passed away.  I am so grateful for those messages, to be able to read them, to be able to keep them.

At some point, Michael and I had decided to make Wendy’s Carepage public, so that other people could take comfort in her story, as I had taken comfort in the stories of others over the years, especially when we were looking for stories of kidney transplants.  We had people follow us from all over the world, and they wrote messages of support as well.

I’m going to miss Carepages, it was a part of our life for a long time. Now in the age of facebook and WordPress, it seems almost quaint to have a blog site dedicated just to an illness journey.  Perhaps that’s why it’s going away.  But it marked our lives.   It marked Wendy’s life, her health, her strength.

Today, Carepages showed me how far we’ve come.  A new town, a new home, a new baby (now eight years old), and new friendships along with the strengthening of old friendships. So thank you, Carepages, for everything, for the good, the bad, and the ugly.

Thank you for the hope.  Thank you for the journey.

 

My Kid’s Not Normal

Wendy has a concussion, and I remarked to a few friends that it was nice to have normal kid problems.

You see, after many years of having Wendy surf the medical system with her kidney transplant, and not-quite-type-one diabetes (her pancreas works at 15%, so it needs insulin but it’s not officially type one), her high blood pressure, her quirky dietary restrictions, and her eye-tracking/learning difficulty (it turns out its hard to read when your eyes don’t track at the same rate–who knew?) It was nice to settle into a diagnosis that lots of kids get, a sports-related injury.

A normal kid problem.

Wendy is the striker on her soccer team, and over the course of a weekend at a tournament, she played a total of 5 games, where she scored 9 points.  In the third game on the first day, she received a cheap shot from an opposing player, who blindsided her from the right side, causing her to go flying and land on the ground, where she hit her head on the left side.  The player got a yellow card for the action.  Wendy was pulled out and tested for a concussion, but she seemed to be ok, so we let her play the next day.

The next day she was playing in her second game and she had already scored on this goalie.  She was barreling down the field and was about to shoot, when the goalie, instead of stepping back to take the shot, stepped forward to engage Wendy, and Wendy went flying over the leg of the goalie and landed on her right side.

That’s when she was definitely not herself, and after a trip to the Emergency Department, it was confirmed that she had a concussion.

A normal kid problem, Except, of course, that it’s not normal.

Wendy’s concussion seems to be taking a bit longer than most concussions for her to get closer to baseline, it’s a slower recovery.  There are lots of possibilities for this, like maybe instead of a mild-moderate concussion, it’s more like a moderate concussion, or maybe it’s because she had seizures in the acute stages of her illness as a child, or maybe it’s because her anti-rejection drugs are neuro-toxic (they’re tough on the brain.)

The truth is, I could wonder these things all the live long day, and it’s not going to get me anywhere, because the recovery protocol is the same:  rest, no screens, moderate brain activity until she is symptom free.  So now, two weeks later, she’s started half days at school and then coming home and sleeping all afternoon.  We wait, and she sleeps, and she gets a little stronger every day.  But she’s such a vibrant kid, who is always in motion, always joking, always singing to herself, it’s tough to see her only be a part of her normal ebullient self.

As a parent, we are only as happy as our least happy kid, and my least happy kid is hurting right now.

She won’t be able to start sports until a few weeks after she’s symptom free, and she is far from symptom free. In the meantime, Michael has ordered her a snazzy “concussion headband” for her to wear next time she plays, where she will look a lot like an actor on the TRON movie set, and we’re looking into ways to get her trained to learn how to roll instead of land on her head.  Because there’s no way she’s going to stop playing soccer, it might be the thing she loves the most to do, and what all of her friends do, and as long as she is feeling good, we will keep her at it.

Because that’s what we do as her parents.  We support her through this crazy life, to live it the best way she can, the way that makes her happy.  And soccer makes her happy.  Even if it’s a little rough to watch her sometimes because I know all the things that could go wrong.  I still wait to see if she gets up after the hard hits and she often will give us the two thumbs up to tell us she is ok.

And we move forward.  Not normal, but that’s all right.  We move forward anyway.

 

Please Advocate With Me

There’s been a lot going on in the news, and here are some of the things that I’m worried about.  Let’s start with CHIP.

CHIP stands for Children’s Health Insurance Program.  It is a jointly funded program, so each state shares the cost with the Federal Government.  Founded in 1997, it was designed to help the working poor afford health care for their kids. This insurance is for children only and you can only get CHIP for your kids if you don’t qualify for Medicaid but you can’t afford private insurance.  In other words, you need to be slightly above the poverty line to qualify for CHIP.

Congress let that funding expire as of September 30 of this year, leaving states to either carry 100% of the funding or let the program die.  This is a program that gets kids physicals, gets them vaccines, or gets them to the dentist.  It keeps them healthy, and personally I’m a big advocate of healthy kids.   When kids are healthy and well fed, they learn better, they do better and they keep other kids around them healthier too.  To me, it is worth a few extra pennies of taxes.  It’s for children.  It’s the responsibility of all of us to keep our children safe, and when I say our children, I mean ALL children.

Then this last Wednesday, President Trump signed an executive order that  instructs federal agencies to look for ways to expand the use of association health plans and broaden the definition of short term insurance.  As a result, the Trump administration could make cheaper plans with less generous benefits more widely available. This undermines the system of the Affordable Care Act, where the stronger and healthier help to bolster the sicker and weaker, with the idea that someday they will also be sick and weak and they will need a robust health insurance in place to cover them in as well.  That’s the way health insurance works.  you pay now, when you’re well, betting that someday you will be sick.

And eventually, someday comes.

It’s come for my family.  I am the mother of a chronically ill kid who was born healthy but acquired a bacteria that wrecked her little three-year-old body, causing extensive organ damage and resulting in a kidney transplant among other things.  The executive order that the president signed will undermine my ability to keep her healthcare.  It will make premiums go way up.  It will make it increasingly difficult for my husband or me to change jobs.

Imagine what the combination of the expiration of CHIP and the Executive Order signed this week will do to the working poor, with a child who has asthma, or a peanut allergy, or was born premature.

Is it possible to convince people that it is in the interest of society to care for our sickest and weakest members, to care for the health of children?  I think it is.  I’m their advocate, I speak for them, that is literally what advocate means.  It means, “I give voice to.”  And so, I am speaking for the chronically ill kids, the working poor kids, the kids who are the sickest and the weakest among us.

I am asking you to call your Members of Congress to re-instate CHIP.

I am asking you to contact the White House to ask the president to revoke the Executive Order.

It is the job of the strong and stable to bolster the weak and the sick.

That’s what communities do, and this country is just one big community.

Please Advocate with me.

 

Happy Birthday Wendy’s Welcome!

It’s been one year since Wendy’s Welcome to the ED has been released.  The video, which was written by Wendy and myself and animated by Payette Architecture Firm, is an introduction to the Emergency Department for pediatric patients.  Wendy is the animated narrator for the nine minute film.  Here are some of the reviews we have received in the last year from the Child Life Specialist who works in the Emergency Department and has collected comments:

11year old – “It let me know about things that were going to happen and that I would have to talk to a lot of people.  My favorite part was learning about the special light in the room.”

Numerous children– Upon entering the exam room “Where is the rainbow light?”

10 year old Chronic patient- “It is cool that a kid, like me, made this!”  I could see his little wheels start turning, wondering what he could create to help other kids too. 

10 year old-  “I know what you do (talking to child life) because I watched the video.” 

15 year old-  “The most helpful part was telling me about all the people I will meet and that I might have to wait a long time”.

4 year old- “ I know I need to change into these (pointing to hospital pajamas). I saw it on TV.”

Paige Fox, R.N., CPEN   “It’s really great to be able to offer our patients a video that teaches them about the emergency department from the voice of a child.  Wendy explaining her own unique experience seems to help kids understand what to expect and make their stay with us go more smoothly.” 

Ari Cohen, MD, FAAP  Chief, Pediatric Emergency Medicine- “It is a perfect example of what can be achieved when good people come together and listen to the ideas of a child.”

Dr. Cohen recently mentioned to me that “Everybody that has seen the video is impressed (meaning ED leadership)and it is being used as an example of what is needed to help the adult patients manage their expectation for their ED visit.” 

The video never would have been possible without the support of the Family Advistory Council at MassGeneral Hospital for Children.  Sandy Clancy, the co-chair of the FAC, helped to keep the project going by setting up committees and getting upper administration to view it and sign off on it.  It was her work in the hospital and Payette’s work outside the hospital that kept the project moving forward, and we are forever thankful to them both.

Wendy’s Welcome has been viewed over two thousand times this year on the Massachusetts General Hospital Website.  Wendy has been interviewed by local news stations and magazines about the video and other hospitals have contacted us for ideas on how they can create their own welcome videos for their pediatric patients.

It’s changing medicine and it’s changing how providers can manage expectations for their patients.  It’s also opening doors for more patient and family participation on the systemic level of health care.  Cooperation between patients and their families with their doctors leads to favorable outcomes across the spectrum.

It has also won three awards.  The Patient’s View Institute honored Wendy last year with the Partners in Care Award and also honored Payette with the Patient Champion Award. In addition, the Institute for Patient and Family Centered Care honored Sandy and me with a Partnership Award for cooperation between patients/families and hospital staff.

What a year!  We are so grateful that Wendy’s Welcome is making such a positive impact on healthcare!

 

 

The Power of Moments: A Review

The Heath Brothers have released their newest book, “The Power of Moments.”  It discusses how certain moments stay with us through a combination of factors.  Conveniently, the factors form an acronym, EPIC:

ELEVATION:  Defining moments rise above the every day. They’re special.

PRIDE:  Defining moments capture us at our best, moments of achievement or courage.

INSIGHT:  Defining moments rewire our understanding of ourselves or the world.

CONNECTION:  Defining moments are moments we share with others.

They give good examples for each of these areas.  Then they challenge you to make more of your interactions moment-worthy.  How do you break the script of the every day?  How do you build in moments that are extraordinary for others?

I’ve never read a Heath Brothers book before, but I enjoyed this one.  Of course, I am biased.  One of this blog’s stories is in the book, the very last story in the very last chapter.  It talks about a moment when Wendy had been in the hospital for many months and two nurses decided on the day that there was a huge snowfall, that they would team up to figure out a way to get Wendy some snow.  This was complex because at the time, she was in heart failure and had a severe water restriction, and of course she was going to eat some of that newly fallen snow.  So, the nurses scooped up some snow, measured it, melted it, measured it again, made a calculation, and then went out into the snow AGAIN and got more fresh snow to bring into Wendy’s room. You can read my blog post about it here.

Dan Heath shared with me while we were talking on the phone, that not only was it a wonderful, defining moment for Wendy and our family, but also for the nurses as well.  It was a tangible thing they could do to bring joy to a little girl from Vermont who had been in the hospital for months.  It was connection.  It was elevation.  It was insight.  It was pride.  And it didn’t cost a penny, just some time.

I really enjoyed reading the book, and I’m so grateful to the Heath Brothers for including our story in it.  One day an advance copy just arrived in the mail, with their special thanks. It is unlikely I will ever meet them, but it’s really cool that our story, Wendy’s story, is now in a book.

You can purchase the book today as it has just been released.  If you read it, please let me know what you think of it.  Here is the link to the book on Amazon.